‘I Live With Pre-Menstrual Exacerbation - for 2 Weeks Every Month, I Feel Like I’m Losing My Mind’

Evie Muir
·9-min read
Photo credit: Cavan Images - Getty Images
Photo credit: Cavan Images - Getty Images

From Women's Health

*Trigger warning: mention of suicidal ideation*

Pre-menstrual exacerbation (PME) is a condition that can seismically impact the lives of those affected. It's defining feature is this: an escalation of the symptoms of a pre-existing mental or physical health complication, such as depression or migraine, in, typically, the two weeks from ovulation. The exact cause is unknown, but it is largely thought to be linked with the body's response to the fluctuating levels of hormones, such as progesterone and oestrogen, that are released in this window of your menstrual cycle – the same shifts that might make you you feel wildly irritable in the time before you bleed.

Much like its sister condition, pre-menstrual dysphoric disorder (PMDD) it is arguably understudied. Right now, it is not an official medical diagnosis in its own right, but is categorised as one of a few types of 'variant PMS,' as 'Premenstrual exacerbation of an underlying disorder.'

Here, writer Evie Muir details how the issue – which affects her Borderline Personality Disorder and depression, among other things – impacts every facet of her life, from love to work and friendship.

I feel the wind rush behind me as I hurl my body towards my car, hands trembling as I fumble for my keys. I slipped out the office, quietly, in an attempt to make my premature departure as unnoticeable as possible. I don't want to do this, but, from the moment I woke up and felt the weight of crushing anxiety sitting heavy on my chest, I knew it was inevitable.

If you need to speak to someone about your mental health, you can call the Mind infoline on: 0300 123 3393. If you need *urgent* help, call your local NHS urgent mental health helpline

One intrusive thought had permeated my mind during a mid-morning break; whispering doubts to do with the trustworthiness of my partner. Come mid-afternoon, I was consumed by them – distressing, cyclical, all-consuming and piling atop one another like paper slotting into a filing tray. Sliding into the driver’s seat, I start to cry: Cathartic, explosive wails that soon taper away to fatigued whimpers. Eventually, I gather myself and email my manager to say I’m leaving early, telling the truth: I’m no use to anyone from this point onwards. I know from years of experience that once the tears start, they won’t stop.

It sounds extreme. But, for me, this scenario is horribly common. I'm in a state that can be triggered by the intrusive thoughts mentioned; emotive crescendos of songs; cute animals on Instagram or minor inconveniences. The consequences can stretch from a dainty weep as I chug my trolley down the supermarket aisle to several days spent incapacitated in bed. For two weeks of every month – 50% of my adult life – I feel like I’m losing my mind. This is due to a condition called Pre-Menstrual Exacerbation (PME).

What is PME?

Narendra Pisal, Consultant Gynaecologist at London Gynaecology, defines PME as 'characterised by the worsening of the symptoms of another (psychiatric or physical) condition' during the luteal/menstrual phases.' NHS GP Dr Adwoa Danso (@theclinicdiaries) notes that there is a significant cohort who might experience this. 'Women with PME are the largest group of women under the umbrella term of "premenstrual problems" ', she says.

Each individual suffering with PME will experience symptoms depending on their pre-existing conditions. You might be familiar with pre-menstrual dysphoric disorder (PMDD), in which the person in question experiences the onset of new symptoms, such as depression or severe irritability, which can impair their ability to navigate normal life during the premenstrual phase. These then go away in the time soon after bleeding starts. (It is this rise and fall of symptoms that can lead to those with PMDD being misdiagnosed with bipolar disorder.)

PME is different in that the symptoms of these conditions are present throughout the month, but worsen in the pre-menstrual period. 'It is not the same as having pre-menstrual syndrome, as [those with PME] have symptoms throughout their cycle, but, characteristically, have worsening symptoms of an existing medical condition such as anxiety, depression, or migraine,' says Dr Danso.

My cocktail of pre-existing conditions includes Borderline Personality Disorder, Complex-PTSD, depression and anxiety disorders which stem from childhood trauma, as well as domestic abuse trauma. For me, PME presents a monthly obstacle to overcoming my experiences and moving on with my life.

Can you get a diagnosis of PME?

My therapist told me that they believed I have PME in 2019. Fortunately, my NHS GP confirmed this likelihood after I explained my symptoms. However, PME is not a standalone diagnosis, right now. (The health service lists PME as a 'variant' core premenstrual disorder – a group of types of PMS.) The upshot is that my doctor’s notes state that I deal with 'PMS'. This, in my opinion, grossly understates my lived realities and has been the root of misunderstanding when trying to advocate for myself in the workplace.

'Even though premenstrual exacerbation is not a recognised diagnosis, it applies to many conditions including asthma, epilepsy and mental health disorders. The primary diagnosis will probably be the underlying condition (anxiety disorder, depression etc) with premenstrual worsening, rather than ‘PMS variant’, although it can be difficult to differentiate between the two,' says Mr Pisal.

Laura Murphy, Director of Education and Awareness at The International Association for Premenstrual Disorders (IAPMD) explains: 'As yet, "PME" is recognised as a "Core Premenstrual Disorder" [as decided by an international multidisciplinary group of experts in 2008] but isn’t an official diagnosis – just a phenomenon that is being studied. That is not to say it isn’t real and it doesn’t impact people. It just means that there’s not enough research yet in this area to pursue the creation of a new diagnosis'.

Dr Tory Eisenlohr-Moul PhD, a Clinical Psychological Scientist and founder of IAMPD elaborates. 'Part of the reason is that it is quite complex to piece apart background symptoms [so, my Borderline Personality Disorder, for example] from the exacerbations [such as the debilitating intrusive thoughts that can creep into my mind in the week before and of my period].

As I see it, the absence of a formal diagnosis places the burden of navigating everyday life, our relationships and our careers on those of us who are doubly vulnerable due to the nature of our pre-existing conditions. Without one, obtaining reasonable adjustments – such as working from home, which allows me to release my emotions safely, instead of bottling them up and hiding my symptoms in public spaces – is tricky. I've received comments from past managers like: 'If we start making changes for you, we’ll have to make changes for all female staff'. I think that surviving on a month-by-month basis, whilst pharmaceutical and psychotherapy treatments remain scarce, is responsibility enough, without this.

How does it feel to have PME?

In the week leading up to, and the week during my period, I struggle to differentiate between what’s real and what isn’t. I can’t trust my judgement, or trust the reliability and safeness of others, including my partner. I’m paranoid and hypersensitive to perceived threats. I push people away due to heightened insecurities and I’ve ended romantic relationships because they feel so frightening, often retreating into myself as a form of protection.

It routinely feels like there’s absolutely nothing good in the world and, on particularly bad days, nothing to live for. My capacity to implement the healthy coping mechanisms I’ve adopted through specialist Trauma Therapy is non-existent, and I find myself falling into comfortable patterns of suicidal ideation, with deep depressive episodes where I’m consumed by intrusive thoughts. Fighting this is debilitating. I’m unable to regulate my emotions and cry uncontrollably and relentlessly. Navigating everyday situations like work and socialising becomes impossible and I’m then consumed with guilt over being unable to uphold such responsibilities.

How is PME treated?

Of course, this will depend on which specific conditions are being exacerbated, for you – treatment for more severe migraine will be different to that for anxiety. 'If patients feel they are experiencing premenstrual exacerbation or any premenstrual symptoms, I would always advise them to keep a diary of their menstrual cycle as well as a diary of the symptoms experienced, including the impact on their daily life,' says NHS GP Dr Sayyada Mawji. 'This should be done for at least two cycles and enables us to distinguish the cause and manage the patient in the most appropriate way.'

Generally, though, at present, treatments aimed specifically at calming the symptoms of PME appear to be lacking. 'Despite a series of clinical trials, we have not yet identified any treatments that beat placebo for premenstrual exacerbation of depression [which is one possible exacerbation that a person might deal with] details Dr Eisenlohr-Moul. 'However, there is good reason to think that many individuals with PME of various disorders will respond to PMDD treatments – it's just a bit more hit-or-miss.'

A deeper knowledge of this complex disorder is required before firm progress can be made. 'We need a better understanding of the underlying biology of PME of various symptoms before we will be able to predict treatment response and develop more targeted treatment,' she adds.

As a person trying to navigate the world with this cruel issue coming every month like clockwork, for me, the urgency of this work cannot be overstated.

Women's Health has reached out to NHS England for their response and will update this piece when one comes in.

What should I do if I think I have PME?

  • As Dr Mawji says, keep a diary of your symptoms, as well as their affect on your life, for two cycles. Take this to your GP

  • If you are experiencing the exacerbation of a mental health issue, speak to any mental health professional, such as a therapist, that you might have.

  • You might want to join an IAPMD support group, to access a community of people dealing with similar issues.

  • Remember, if you are experiencing a mental health crisis, ring your local NHS urgent mental health helpline.

What are the signs that I have PME?

According to IAPMD, If you have a condition, such as one of the below, and you experience symptoms all month long, but know that they become more severe in the premenstrual phase (try keeping a journal and logging your symptoms for a few months, to you can see patterns) then you might be experiencing PME. Remember: PME can apply to physical conditions, too, so watch out for if you experience worse migraine or asthma symptoms in this time.

  • Clinical depression

  • Suicidality (suicidal ideation, suicide plans and suicide attempts)

  • Schizophrenia

  • Anxiety disorders

  • Alcoholism

  • Eating disorders

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